DEALING WITH ONE-UPMANSHIP

Like many people suffering from a chronic and often invisible illness, I rarely bring up how I am actually feeling when talking to someone. Even when specifically asked, I’ll give the standard “I’m fine” or “oh, you know, good days and bad”. I will, occasionally, if I feel comfortable enough, be more truthful and explain that I’m in pain, or I had a bad fall, or I’m fatigued, or any of the many, many symptoms I encounter. Being truthful about how I actually feel is a rarity, so it’s especially disheartening to have someone complain about their own health afterwards. Regardless of the reasons for doing it, this act of one-upmanship can be especially discouraging to those with a chronic illness.

Why do people do this?

I’m not entirely sure why people feel the need to one up someone when it comes to talking about their health. Some people will obviously be trying to sympathize and show that they too know what it’s like to feel crappy. I’m sure some people don’t know how to relate and think that talking about the negatives of their health seems like the best option. Others though, just need to be the center of attention. They always have to be the person with the worst condition. If you are fatigued, well, they’re “super tired”, too. If you are in pain, they’ve also got pain somewhere. Whether it is truly trying to relate to us or just trying to gain superiority and attention, it’s still pretty demoralizing.

Nothing in Common

For a lot of folks who get diagnosed with Multiple Sclerosis, life changes a lot. Not everyone and not always right away, but many do eventually get their life flipped around a bit. I am one of those people, who around 15 years or so post-diagnosis, ended up on disability, no longer able to work at the career I spent most of my life preparing for. Some people don’t end up on disability but still struggle to keep up with life. When everything becomes exhausting because of fatigue, it becomes difficult to function like everyone else. No matter what your specific situation, many people with a chronic illness like MS begin to feel like they have little in common with the people around them.

With most people

Generally, when people say they get along with someone or say they like a person, one of the common reasons is because they “have a lot in common”. Having MS can start to erode all the things you had in common with people. There’s a reason we like to say “you don’t get MS, until you get MS”, because it’s very hard to understand what life is like living with this disease. It’s hard to understand everything we live with, the pain, the fatigue, the cognitive issues, and all of the many, many symptoms that we can encounter. With so many of our symptoms being of the invisible variety, we often get dismissed (“oh, I’m tired too”), which really drives home the feelings of misunderstanding.

Buried Beneath MS: I’m Still Me

Multiple Sclerosis (MS) most often affects people in ways that are not easily visible to others. You can’t see our fatigue, you can’t see our poor vision, and you can’t see our pain (to name just a few examples).

The more visible MS symptoms

Sometimes, however, MS will manifest in ways that are visually obvious to those around us. Most commonly, the first symptoms of MS that are visually apparent to the untrained eye, have to do with things like poor balance and spasticity in the legs because those kinds of symptoms greatly affect how we walk and usually contribute to the need for a cane, walker, or arm crutches.

Visible mobility aids

Because of symptoms like these as well as weakness/paralysis (again, just naming a few) people with MS may also eventually end up using a wheelchair. Unfortunately, in today’s society, the average individual who sees someone using one of these mobility devices will probably think (maybe even subconsciously) that “something is wrong” with that person. At least that is what I personally think. “Wrong”, I hate that word, just the same as I hate the word “normal”, but that is a whole other thing. So far, we have touched on people who have MS but no obvious signs of physical disability and people who have MS but do have visible signs of physical disability.

Cognitive disability

But what about cognitive disability? You can’t see it from a distance or take a picture of it but you can often just tell that someone has it (“it” being some sort of cognitive disability/impairment). So I am not sure whether to consider this an invisible symptom or a visible symptom because it’s kind of a bit of both.

SPECIAL MESSAGE from Sue Ellen Dickinson

I want to talk to you for just a minute about something really important......and that is....
I need your help!

I've never asked for your help before, but I'm asking now......so please hear me out.

See......Heart Talk is totally listener and subscriber supported.

But, unfortunately, it costs money to put this program on the air, and bring it to you and many, many  others  all around the world, who enjoy listening to HEART TALK.....and I want to keep it that way.

So far, it's been just me  who's been paying the monthly bills to keep this program on the air..

I have no outside help, financial or otherwise to help me pay these bills, so it's all coming out of my own personal pocket.

But now, I've got to ask you a favor.  Oh.....you can relax.....I'm not asking for money.. .....and I won't EVER ask you for money .....because believe me, I understand where many of you are with your finances, and that's the last thing I'd ever ask of you.

But there IS something you can do for me that's not going to cost you a penny...., but it will help me tremendously.

Here's what I'm talking about.....

Hi, I Have MS…

Not many people other than close family and friends knows that “Calie” is not my birth name. My true first name is “Calissa”, but I’ve always gone by “Calie” for short. I despised my name growing up. “Calie” was what I was called since birth, so I never understood why my parents had to do something so terrible to me. Didn’t they know that the name “Calissa” was just plain weird?!

It was mortifying to me

Each new school year, I would make myself sick dreading the new teacher calling our names for attendance. I knew they would call “Calissa”, and I would have to tell her that I go by “Calie”, and it was mortifying to me that my peers would know the name I went by was short for something so (at the time) hideous. I seriously begged my parents on more than one occasion to let me go to the courthouse and legally change it to just “Calie”. But, I knew “Calissa” was the name I was given, and whether I hated it or not, I would always know it was my given name…even if I changed it on a piece of paper. Of course, once I graduated high school, I realized my name wasn’t so terrible after all. It was on all of my legal documents, so I decided to just embrace it. Eventually, people even started telling me they thought it was a beautiful name, so that helped too! It’s humorous now, thinking how much time I wasted worryingover a name that wasn’t all that bad to begin with. It’s unique, and it’s mine, so after years of finding it torturous and utterly repelling, I said, “to heck with it,” and decided “Calissa” was an ok name to have. Obviously, I still go by “Calie”- it’s what I’m used to- but when people call my real name I no longer hide my face in shame.

Hiding and denying my diagnosis

Your Shortcomings Can Be Your Superpowers

Warning: This may be a trigger post for some.

Negativity. Why it is so popular, I will never understand. I used to be a negative Nancy myself, so I do understand how it can swallow you whole. Of course, I’m human and still have negative thoughts, so I get it. I really do. Sometimes life is the pits, and life with MS can feel like an extra ton of negativity on your back. The extra negativity can unleash the Hulk in all of us from time to time. BUT, one thing I will never understand is why people choose to stay stuck there. I’ve found surrounding MS, and even in MS communities, negativity has run rampant. There’s negativity from others towards us, and then there’s the negativity that some after diagnosis can’t ever shake, and then unknowingly spew that onto others. It honestly saddens me on both ends. To live life only seeing negative aspects of every situation and to constantly be negative towards others makes life seem so hopeless.

The world can already be cruel

I for one, can’t let negativity get me down. I’ll be honest, from time to time it does, and I’m sad to say I sometimes allow it to affect me. However, I refuse to let other people’s miserable demeanors and outlooks shed any light on my views. Yep, MS stinks. It’s taken a huge toll on my life, and I’ve faced my demons because of it. I have determined though, after many years of dealing with this subject, that it doesn’t do any of us one bit of good. Not even a little bit. We are not stuck with negative mind-sets. In my opinion, bettering ourselves should always be a priority, and sometimes I think people forget that, including myself. This world can already be so harsh and cruel, what good does it do to add to that?

Struggling To Be Perfect

As he drove the car, I stared out the window from the passenger seat. Daydreaming. Watching my life pass me by. Reflecting on everything I had voluntarily and involuntarily given up. Knowing I was about to surrender one more part of myself.

We were traveling to a party and I had agreed to be someone else. I have played this game before but this time it didn’t feel right.

Mentally steadying myself

Upon arrival, I mentally steadied myself. Before we exited the car, I placed my cane in the back seat. En route to the house, I stumbled three times on the sidewalk while trying to keep a normal walking pace. But luckily I made it safely without tumbling to the ground.

We met the host at the front door and she invited us in. As we crossed the threshold, I quickly grabbed my partner’s hand. It looked like a sign of love. But the truth is I did it for balance.

The front room of the house was full of fake friends making noise. And despite being surrounded by a group of people, at that moment, I felt so alone.

They only knew the lies

Everyone was a stranger to me. Not because I didn’t know them. It was because they didn’t know me. They only knew the lies. The lies he asked me to tell. The one’s that stopped me from being me. The one’s that hurt my spirit.

I’ve been dishonest so many times; my bright eyes have become dim. And when I’m in these situations, I don’t really smile. I don’t really laugh. I don’t really feel. I only concentrate on being inconspicuous. Trying not to let my foot drag. Pushing through fatigue. Giggling at jokes my cloudy mind doesn’t understand.

All the while he keeps whispering, “You are doing so good. You’re perfect.”

The Best Thing to Do Is Live

The best thing to do at this moment is…Live.

Life happens

Life ‘happens’ to each and every one of us. We have joyous, sorrowful, strenuous, fun, fearful, confusing times and everything in between. If you get from one phase to the other– especially the difficult ones – pat yourself on the back because that means you’ve made it through one more thing, obstacle, day.. What you have successfully done at those moments is…live.

Looking back as we get older

Some people approach milestone years – 30, 40, 50… with disdain. However, there is but one alternative to getting older. A different perspective would be to allow yourself to age gracefully knowing that you are wiser, sensationally seasoned and a conqueror. Life is filled with ups and downs, highs and lows. The older we get, we can look back with warmth at the pleasant memories from the good times… And we can look back with pride that we are still here after enduring the storms that clouded our trajectories. New years bring new opportunities, experiences and lessons. We can then apply what was learned in our yesteryear to navigate wiser to our future. Welcome each year, each day with gladness and should there be a moment when apprehension or spurn creeps in relative to getting older, the best thing to do is to just send those thoughts where fleeting thoughts abide… and with determination and zeal, live.

My Alienating Perspective

As I sit on my couch, scrolling through social media on my phone, I notice a torrent of updates from a family member complaining about some recently delivered cleaning product arriving damaged. As I read up on the tirade, it became clear that this was more than an inconvenience to them, it was just another sign of how their life is somehow worse than they’d like it to be. These sort of complaints are common, especially in this day of social media, where it seems like we can often have a steady view into people lives any time we want (or don’t want). This often unfiltered view into people’s lives and their daily problems can often make me feel alienated from and resentful of many people. As I struggle in a fight against Multiple Sclerosis, the many mundane problems of most people begin to feel trivial and greatly impact my perspective on them.

Everyone has problems

I get it, I do, everyone has daily difficulties in their life. Let’s face it, everyone sees their own issues as the most important, the most difficult. As I sit here and complain about someone’s mundane problems and compare them to mine, there could be someone dying of cancer seeing me complain and think the same thing about me. You can never truly be in someone else’s shoes, so we shouldn’t judge them on what they complain about. Not everyone can handle the same threshold of pain and problems that life throws at you. I know all that, I know that any sort of judgment is wrong. With my perspective, when I see someone complaining about a crappy day at work, when I’m unable to workand wishing that I could even have that bad day at a job, frustration begins to build and I can’t understand them. But perspective is the key word there, I’m not seeing it from their perspective, only my own. I fully understand this, but it doesn’t make it easier.

Finding Hope

*Disclaimer— This post will talk a lot about my faith. I know there is a lot of controversy on that subject, and while I would never try to push my beliefs on anyone else, I wanted to give you all a fair warning before you dive into this one. Also, I respect your right to believe or not to believe, so please respect my right to believe and write about it as well. I share and write everything I do in hopes that my personal experiences can help others as well. And if religion and faith isn’t your thing then that’s ok, I love you anyways!

Coping with loss

I recently dealt with the death of my grandfather, and while it hasn’t been even a month, its still something I think about daily. The thing about death is that even though a part of your life is now missing, life still goes on around you as if everything is exactly the same. I think that has been the most difficult part for me. He is gone, and it feels like a substantial piece of me is missing, but I have to keep living my life. I know that’s exactly what he would want me to do, but it is harder than I imagined.

The finality scares me

Death is very surreal to me. Even though we knew his time was coming, I didn’t expect to feel this way after he was gone. It doesn’t feel real. It feels like the next time I go to his house to visit he will still be sitting in his recliner to meet me with an ornery grin and ask me how I’m doing. It’s made me rethink life and everything that I know to be true. The craziest thing to me about life is how you do everything in your power to grow to be a good person. Our parents raise us to be functioning members of society, we go off on our own and find our passions and success. We work hard, and we strive to live and to love to the fullest, and then one day we’re gone. When we leave this earth, our families are left to grieve, to preserve our memory and to pick up any of our loose ends. It’s bizarre to me after I’ve had this much time to think about it. He’s just gone, and that’s like a huge punch in my gut. It leaves me breathless and it hurts. I’ve always been scared to lose my loved ones, and losing him was no different in that sense. The finality of it is scary to me. The only thing that makes sense to me when I think about how confusing and life changing this has been is my faith.

An Open Letter to Myself About My MS

Dear Body,

Why do you continue to disobey me? I don’t understand. Have I mistreated you so badly over the years that it’s time for revenge? Have I done something so dastardly, so hateful that you won’t forgive me? Or do I simply have bad luck?

I know I made some bad choices in the past. Like the time I ate a quart of Ben and Jerry’s Chunky Monkey ice cream for dinner, or when I’d stay up all night to study for college exams. I didn’t mean to neglect you so I don’t think you should be angry.

Maybe you’re still angry about the time I drove into town with my friends during a Vermont blizzard and our car was hit head-on by an elderly driver. A concussion and sixteen stitches in my forehead marked the beginning of numb feet and hands. Uh oh. Maybe that’s it.

Grateful for the good years

I know I should consider myself lucky for the years you ignored my MS diagnosis by allowing me to walk, drive and care for myself unassisted. I was truly grateful for that.

I’d like to remind you that for the first eight years with MS I prayed for an FDA approved medication to help us. When the first two medications came on the market, Betaseron and Avonex, they caused terrible side effects. I’m sorry. The third injectable in 1998, Copaxone, was the charm.

Bad Days Will Happen

Life with Multiple Sclerosis is often described as a roller coaster. With a wide variety of symptoms that can pop up at any moment, we never know when we’ll have the next high or low. No matter how much we plan for the next day, we have to be prepared to toss those plans in the trash. I know I’ve woken up many days with a grand plan of doing super important things (you know, like laundry, showering, walking the dog, etc.), only to have my body suddenly fail me. These types of last minute struggles and changes of plans can be extremely hard to cope with and tend to make me down on myself. It’s important to remember that these moments will happen though, and we can’t beat ourselves up about them.

Canceling plans

Canceling plans is a big part of having MS. The unpredictable nature of our disease can wreak havoc on even the best laid plans. Triggers like stress and temperature are often big culprits, however, there are times when our symptoms get ramped up and we can’t pinpoint any particular reason for it. Sometimes, it just happens. I don’t know about you, but when something just happens and I can’t figure out a reason, I get incredibly frustrated. Not that having a reason makes it that much easier, especially when some triggers are simply unavoidable.

IS THIS DISABILITY SHAMING?

In the time since I was diagnosed with Multiple Sclerosis I have always worried that I would one day be discriminated against because of my MS.

I don't mean it was any sort of fear or anxiety, it was just something that I didn't want to deal with that I knew I eventually would have to, so maybe "worry" is too strong a word.

But since then, I have seemed to develop a concern regarding anyone being able to blame my MS for me not being able to do something that I actually can, because I still try to take personal responsibility for the things that I know I should.

AN ONLINE DEBATE

Well, the other day something interesting happened. On Facebook, I made the mistake of engaging in a conversation of the political type and for some unexplainable reason, I actually thought that I could express a difference in opinion and spark a constructive conversation

… Well since when has the internet not been a place for meaningful conversations and instead a place for exchanging angry insults?..

As you could imagine this did not work out as I had hoped it would, and I was quickly ganged up on by everyone for not agreeing with them. No big deal, I should have known better, this is the internet, but here is where it got interesting.

You see, when I engage in any sort of "debate" about anything (whether it's politics, philosophy, or simply solving a problem regarding the best way to complete a task) I always try to look at it from a "logical" point of view...: problem -solving.

At the same time, I have always been interested in seeing how someone else views a problem and what they think the best solution is.